Tuesday, March 25, 2014

Today is the American Diabetes Association’s Alert Day, its annual day to promote screening for diabetes. Diabetes is a serious health condition that reminds me of many psychiatric illnesses—it is serious, has substantial risks and requires attention. Diabetes is also like serious psychiatric disorders in that daily choices can make a difference to improve outcomes. For diabetes, an exercise program can improve or in some cases reverse the development of diabetes. (Exercise can also be an important part of treatment for mental health conditions).

There is another connection: many people with psychiatric illnesses are at increased risk of diabetes and the medications used to treat those conditions often confer additional risk. These risks should be weighed against the benefits of these medications, which can also be significant. The most common mechanism of the increased risk is weight gain, which is the underlying cause of most of the rise in adult onset diabetes. Many psychiatric medications can lead to an increase in weight, which in turn raises the risk of diabetes. Second generation antipsychotics can be a particular concern in this area, but they do not all bring the same risk. For more information on the risks associated with many of these medicines, see NAMI’s information on diabetes and mental illness.

Another piece of the puzzle is that the research literature shows that individuals living with mental illness do not get screened adequately. This could be caused by many things, including inadequate care. NAMI members have helped to change many aspects of the health care world, and by advocating for screening we can help primary care doctors approach the problem. If you cannot join in the ADA screening day, ask for a screening at your next appointment. It is a simple blood test. It could be lifesaving, especially if you are in one of the ADA risk categories or are taking psychiatric medications.

The legislation included some of NAMI Wisconsin’s long-standing priorities including funding to address limited access to psychiatry and crisis services in rural Wisconsin, funding for Crisis Intervention Team training to improve law enforcement officers’ understanding of mental illness and, last but certainly not least, funding to improve and expand Individual Placement and Support (IPS) supported employment in Wisconsin. In partnership with other advocates, NAMI Wisconsin presented a proposal to expand funding for IPS to Representative Joe Sanfelippo, who soon introduced it as a bill that gained strong bipartisan support. As a result, many more Wisconsinites living with mental illness will be able to find and maintain competitive employment.

NAMI Wisconsin’s grassroots advocates worked throughout the legislative session to educate our policymakers about our issues. During legislative hearings, NAMI members spoke passionately about their personal experiences and suggested ways to improve our state’s mental health system. Their voices were heard. Much of the recently signed legislation reflected our calls to improve access to recovery-oriented services and increase diversion from the criminal justice system.

Before signing the bills at the county human services department, Governor Walker visited NAMI Brown County, a local affiliate in Green Bay, to tour their resource center, learn about NAMI programs and chat with us about mental health. We discussed the need to devote more attention and resources toward fighting the stigma of mental illness, particularly when stigma becomes outright discrimination.

Governor Walker mentioned that when people live with other chronic illnesses—using his wife, Tonette, who lives with diabetes as an example—they receive support and comfort, not shame or embarrassment. Our response should be no different when someone experiences mental illness.

The Governor also emphasized that although this legislation is a significant step in a very promising direction, it should not be a "one-time photo-op," but rather a continual investment in mental health services and stigma reduction. We were encouraged to hear an interest in maintaining the current momentum. In the past year, Governor Walker and the Legislature have made significant investments in mental health.

The Governor’s 2013-2015 budgets included state funding to expand community-based care statewide. In our county-based system, the state has never provided this type of support. The budget also included funding to open several peer-run respite centers, an exciting service that our state has never seen.

Although these are excellent investments, there is still plenty of work to be done. We still hear from people around the state who face discrimination in employment, school and health care settings as a result of their mental illness. Our jails and prisons still house thousands of people living with mental illness that need care and compassion, not incarceration. Wisconsin is still one of the states that turned down federal dollars to expand Medicaid, a decision that hurts thousands of Wisconsinites affected by mental illness.

Nonetheless, the last year has seen a promising movement toward community-based, recovery-oriented care and we will work hard to keep Wisconsin moving in this direction.

Over the years I have met many families who have shared with me what NAMI Family-to-Family has done for them. They have told me how much they learned, how they have been supported, and often, how much it helped their family member. I have also been told that Family-to-Family saved their lives.

When people have taken the Family-to-Family course, they know it makes a difference for them. In a world that demands outcomes, however, it is also important to show this result is due to the course, and not due to chance or the passage of time. Thankfully a team of NAMI Maryland chapters and University of Maryland researchers led by Dr. Lisa Dixon have done just that.

First a quick review is in order. NAMI’s Dr. Joyce Burland developed Family-to-Family in 1991. It is a 12-week course taught by trained families of individuals living with a serious mental illness for other family members. The model emphasizes education, support, self-care and problem solving. It is has been used widely across the country, with over 300,000 people having taken the course, and 3,500 individuals having been certified as trainers. Family-to-Family has been translated into many languages, and has been culturally adapted and used successfully for Spanish communities in America and in Mexico and Puerto Rico (called NAMI de Familia de Familia). Today, Family-to-Family is the largest family psychoeducation program in the U.S.

Several initial papers in the decade beginning in 2000 suggested that Family-to-Family had discernable effects for the people in the course. In 2011, the first randomized controlled trial (RCT) was published of Family-to-Family, comparing the experience of people enrolled in the course and people on the waiting list as controls (they later took the course). In the Family-to-Family study, 318 individuals were assessed over a three month period on areas of coping, empowerment, and other areas of experience. The design of this study is important to understand.

The RCT is a gold standard of methodology which is designed to improve the certainty of the findings. The idea of this kind of study is to randomize a group of people eligible for the active or study arm or a control group and to follow them over time to see if the results can be attributed to the active group. The individuals doing the assessment of the impact of the course did not know if they are in the active or control group. Also, an assessment of the fidelity of the model was integrated into the study. This helps to ensure that people are getting the model when they are in the active arm of the study.

The landmark study found that the individuals in the active group of the study showed improved abilities to cope and feelings of empowerment. The control group did not show these results. The study results did not show a decrease in subjective burden of illness—the family members knew they still faced a challenge. Results on problem solving and reduction of distress were positive but not definitively so. Further studies would help to see if that finding is a real outcome of the model.

This study led to a remarkable moment in NAMI history. The National Registry of Evidence Based Practice (NREPP) listed Family-to-Family as an evidence based practice. This is a core achievement for the course. Research based evidence meets individuals experience in this certification.

A follow up study showed that the positive results stay with people who took the course. In 2013, Lucksted and colleagues followed up with the same population data set that interviewed individuals at different times. They concluded that “all benefits of Family-to-Family were sustained at nine months” including reduced anxiety improved problem solving, improved coping and knowledge. They also noted that increased attendance led to better outcomes.

Family-to-Family has been a great addition to the world of mental health services. Families often report they experience feeling left out of care, or that communication is inadequate from mental health professionals. These studies demonstrate the impact that Family-to-Family can have to improve how the family copes and functions. Policy makers and professionals have begun to take notice. Looking at how the course impacts the individuals who live with serious mental illness and how to use this program in the digital age are important areas of future research.

If you love someone in your family who is living with schizophrenia, bipolar disorder, depression or obsessive compulsive disorder (or related disorders) consider taking this important and scientifically validated course. Contact your NAMI Affiliate to find out where it is being given. It’s free, and thanks to these studies, we know it works.

Thursday, March 6, 2014

By Darcy Gruttadaro, NAMI Director of the Child and Adolescent Action Center

Children have been seriously injured, traumatized, and some have even died from the use of restraint and seclusion in our nation’s schools. This is well documented in media stories and reports issued over several years.

These stories reveal that the use of restraint in schools has led to children being sat on, stuffed in duffel bags, and held down sometimes unable to breathe. Seclusion in schools has included children being locked in small rooms, closets, and other restricted spaces. In some reported cases, students and staff describe hearing children screaming in seclusion rooms and parents report children returning home traumatized.

How Common Are These Practices?

Data recently reported by the U.S. Department of Education shows that at least 66,000 incidents of restraint and seclusion occurred in a single school year. This figure is likely quite low since three of the largest city school districts—New York City, Los Angeles and Miami—did not report data. Perhaps most troubling is that 70 percent of the reported restraint and seclusion cases involved children with disabilities, including those living with mental illness.

It is hard to believe that there are no federal laws regulating the use of restraint and seclusion, especially when you factor in the reports chronicling injuries and deaths. What’s more, there is no evidence that restraining a child or putting children in unsupervised locked spaces provides any educational or therapeutic benefit to a child. On the contrary, it often traumatizes them.

Much-Needed Federal Legislation

NAMI applauds Senator Tom Harkin for introducing federal legislation that limits the use of restraints to emergency circumstances and eliminates the use of seclusion in schools. This legislation, the Keeping All Students Safe Act (Senate bill 2036) strikes the right balance by helping schools to promote more positive learning environments, while preventing behaviors that put children and school personnel at risk of harm. This legislation also promises to improve academic outcomes for all students, including those living with mental illness.

Students with mental illness have tremendous academic potential, especially when schools understand their needs. This led to NAMI creating Parents and Teachers as Allies an in-service education program to help school staff better understand emerging mental illness. The more that schools understand the needs of these students, the more positive the academic experience for students and staff.

Students with mental illness deserve the opportunity to reach their full academic potential, the foundation for an independent and productive adult life.

Learn more about the Keeping All Students Safe Act and the reports and data cited in this blog by checking out these links:

Monday, March 3, 2014

These sometimes are hard facts to accept, because they mean there are no simple answers; however, they are still a source of hope for people living with mental illness.

More choices mean more hope. When there are several options to choose from, a person has a better chance of getting it right in finding an effective course of treatment. The key is working with a doctor and making decisions based on a person’s specific circumstances and life goals.
Getting it right also means avoiding unnecessary side effects or risks. It means getting the right help in time.

NAMI needs your help now to send a message to the federal government’s Center for Medicare & Medicaid Services (CMS), which has proposed limiting access to certain psychiatric medications under the Medicare Part D program for seniors and people with disabilities.
We are preparing to file a formal “comment” this week along with thousands of signatures on a petition in opposition to the proposal. We hope to have at least 10,000 signatures. Please help by signing here and sharing it with family, friends and others. We also urge you to send comments to CMS with your stories and those of people you know and love.

It doesn’t matter whether choice involves medication, therapy, a support group, help from a peer, or an exercise routine. The principle is the same. Access is critical and barriers should be minimized. Choice is important and so is timing.
As one woman who communicated with me explained, it can take time to find the right treatment. “What I learned is that different people respond to different medications differently. It is not a one size fits all. It took 10 years for me to find the right balance of medication and I had a very skilled doctor that cared and a lot of medications to choose from until we got it right. Taking away (these) choices limits a person’s ability to find the right combination.”

Currently under Medicare Part D, health care plans must include “all or substantially all” medications in six protected classes of medications in their “formularies,” i.e., the list of medications the plans cover. This requirement has prevented insurers from imposing prior authorization, “fail first” requirements or other restrictive mechanisms that limit access to other options.

CMS’s new rule proposal would eliminate protections for antidepressant medications in 2015 and antipsychotic medications in 2016.
Overall, choices of medications would be greatly narrowed for individuals with depression, schizophrenia and other mental illnesses. For too many people, steps would be taken backward, rather than toward recovery—and stepping back means pain and risk of increased hospitalization, criminal justice involvement and despair.

Early effective treatment often hinges on making a smart choice at the outset rather than depending on a cheap cookie-cutter option. In addition, people with disabilities, including mental illnesses, have to wait two years to get onto Medicare, and by then many of these individuals have experience and know which medications work and can be tolerated well. We shouldn’t make them jump through a number of hoops the get the right help. We know from experience that imposing complex processes interferes with good treatment.

In response to one of my previous blogs, I received a comment from a mom whose son’s medication dosage was arbitrarily reduced by a private insurer after many years of stability and over the objections of his doctor. She asked for help and did not know where to turn. Placing the burden on doctors, individuals and families to overcome barriers to treatment makes no sense. The CMS proposal flies in the face of scientific knowledge and the personal experiences of many people living with mental illness. Prescribing decisions must be individualized, based on clinical history, side effect profiles and personal preferences.

Medication is usually just one part of the foundation needed to support a person’s recovery from mental illness. Weaken any one part of the foundation and years of progress, are put at risk. Make sure that CMS knows the impact of this rule on real people and real lives. Join the NAMI movement and take action today – sign a petition, submit a comment, and tell CMS why Medicare Part D must continue to support recovery.